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Old Tue Aug 10, 2021, 11:57 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
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Quote:
Originally Posted by Matthew42 View Post
Her neutrophils before ATG were around 400, but now average around 700. She said that neutrophils will rise way before hemoglobin and platelets. She went 14 days without a blood transfusion in July (normally she transfuses every 9 days or so). Sometimes there can be a sudden drop in levels for a week or two at times in the journey, but there should be an "upward trend" overall, even if levels drop suddenly at times.

All that said, her doctor said that there is real improvement from IST therapy, but she won't deem the treatment successful as her hemoglobin and platelets have not shown strong enough improvement. They are going to wait another two months before considering doing the rabbit. She said if the horse-ATG fails to bring her levels up in the coming months so she can get off blood transfusions, the rabbit-ATG should get her over the hump. They would give her even longer than two months, but her age is a concern (almost 70). All that said, a slow recovery can be a good thing, too, just like a too fast of recovery may not be a good thing. It's hard to say. She confirmed during this appointment that there are many patients who don't get off transfusions or show improvements until 6 months, sometimes even 9+. There are cases where it took almost 1-2 years for horse-ATG to work, but she said it's not safe to let my mother go down that road. She said there may be advantages to a slower recovery, but the risks are too high for older people to wait around. She insisted on my mother's age, over and over again. But, even if the horse-ATG ends up working, my mother will have had a slower recovery for sure.

She now has iron overload, but the doctor said that because she is in otherwise good health, not to get too excited over it. Lots of people have it and most get their levels down to below 1000 (which is acceptable). If she had a heart problem, it would be much more serious. It's also not been festering in her body for a long time, so that it is a good thing.

Also, getting off RBC transfusions is more important than platelets. Sometimes, platelets are last to come up, but not always.

The biggest positives for my mother were: higher neutrophils averaging over 500 for the past 6 weeks + a bit higher cellularity in bone marrow. She is positive about IST working, but can't guarantee the horse-ATG will do the trick in the next two months. She cannot wait, she said, because of her age. She also said that second ATG is no riskier than the first. Having 2 ATG's is no big deal. I am just saying what she said.

I forgot to mention that my mother's reticulocyte is now in the normal range. This is also evidence that she her bone marrow is now working much better. Just waiting for the hemoglobin and platelets to come up.
Hi Matthew42,

Is your mom on cyclosporine now? Also, did her doctor discuss Exjade (or equivalent) for her iron overload? Did your mom have Eltromobag initially? Has she had her EPO levels tested?

Has there been any rise in her hemoglobin or platelets? How frequent are her transfusions?

You can't rush the recovery from Aplastic Anemia unfortunately. You can stop the immune attack with ATG, or more slowly with cyclosporine, but the marrow can still take years to recover.

I remember my doctor wasn't happy with my response at 3 months as well and didn't think the ATG was working. However a few months later my platelets took a small step forward and the recovery began.

Stay positive!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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